1. Community
  2. Brain and nerves
  3. Idiopathic Intracranial Hypertension

New to this!

Posted , 2 users are following.

mariegrace
mariegrace

I have just been reading all of your symptoms and saying yes, that's me, except I am nearly 63 years old! I have had the severe headaches for almost two years and various trips to doctors, opticians and hospitals (including the dreaded lumbar puncture) have led to the 'possible' conclusion that I may have IIH. I have tried all the pills, none of which made any difference except to make me feel more and more sleepy and am now trying Topiramate, Oh and to lose some weight!! Any other helpful suggetions would be most gratefully received, as the doctors don't seem to have a clue and don't understand just how debilitating this continual pain in our head is.

1 like, 4 replies

4 Replies

  • VDubsTDi
    VDubsTDi mariegrace

    Posted

    Have you lost any of your vision ?
    • mariegrace
      mariegrace VDubsTDi

      Posted

      The pain is behind my left eye and the vision in that eye has been affected. I now need glasses for long sight which I never needed before and I have noticed that my vision is getting worse. 
    • VDubsTDi
      VDubsTDi mariegrace

      Posted

      I would say your thing to do are:

      find out if your eyes are showing papilloedema? 

      check if you have been scanned for a brain tumor and an aneurysm 

      Find out what pressure your lumber punch showed? 

      ask your neurologist to ref you to nureo surgery to look at doing a shunt?

      think about the meds you are on? If you want you can list them and I could see if any could give you Intracranial Hypertension which is just like Idiopathic Intracranial Hypertension but they know why. 

      By the way I'm on Facebook as _____ and Skype and YouTube as _____ 

      Patient Moderator Note: I have removed (a) Social Media link / s from within this reply as they are unsuitable for inclusion within these forums. If any user is interested in this removed information they should contact the author via the Private Messaging system requesting such. Thank you for your cooperation.

      What is / how to use Private Messaging? See patient.info/forums/discuss/private-messages-226361

  • mariegrace
    mariegrace

    Posted

    My left eye is showing slight papilloedema, MRI and MRV's are clear and LB pressure is 18, so all signs are not too bad, but still I have bad headaches and dizziness

     

Back to top

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.